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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based on given prompts.

Tuesday 21st April: Reflection 

This is a day to reflect.  For the WEGO Health family, we reflect on the inspiring and tireless work Health Activists do every day.  Reflect on your journey today.  What are your thoughts and hopes for the future?

Currently, I am reading an emotional and uplifting book, called The Life List, by author Lori Nelson Spielman.  It tells the story of loving daughter Brett Bohlinger, struggling after the death of her beloved mother.  In the book, she is left not only struggling with the death of her mother, but also is then left to pick up the pieces of her shattered life, after also losing her job at the family business, and then learning that her mother’s will, has one big stipulation – to receive her inheritance, Brett must first complete the life list of goals she’s written at the age of fourteen.

The Life List by Lori Nelson Spielman
The Life List by Lori Nelson Spielman

In the book, therefore, she is reintroduced to the goals and ambitions she made as a child and to reflect on the choices she has since made and the life she is currently living.

During my formative teenage years, although I never made a written list of the goals that I wanted for my life, just like anyone else I envisaged what my future would look like; marriage to a wonderful and kind man, a couple of children, and a successful career helping people for instance.

It is interesting though to ask about the efficacy of making such life lists.  Are they a useful tool to direct your future toward a life that you wish to live?  Or, do they only serve for disappointment when the life you saw for yourself is so far removed from your current reality?

For those living with chronic illness, for example, none of us or wanted or imagined the life that we have been stuck with.

There is nothing we want more than to be productive members of society, but unfortunately, our bodies have other plans.

Once upon a time, we imagined a life full of love, happiness, career successes, but instead, our lives revolve around our symptoms, hospital appointments and cancelled plans.

What would your ideal life list look like?
What would your ideal life list look like?

Admittedly, if I were to compare the life that I saw for myself as a teenager, like Brett in the book, and the life that, as if often seems, was planned for me, I would feel enviable disappointment regarding my life, and envy for those who are still able to pursue their life-long dreams and ambitions.

In the book, however, Brett embarks on a personal journey in search of her adolescent dreams, and by doing so she finds that life’s sweetest gifts can be found in truly unexpected places, and happiness can look remarkably different to the life that we imagined or had planned in a life-list.

And I believe that living with a chronic illness can also teach similar lessons; our lives may not have turned out as we imagined, but sometimes we may find little gifts which make life better than the one we imagined.  For instance, if it were not for the neurological condition I live with then I would not have found a passion for blogging, and I like to think that although I do not have a career which entails helping people, I do good work maintaining this blog and perhaps helping others in the process.

Another gift I have discovered on this chronic illness journey is the wonderful friends I have made along the way, and continue to make every day.

The support and friendship among the ‘spoonie’ community are astounding, and every day I am discovering new friends who are special and making friendships that will last for many years to come.

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon given prompts.

Wednesday April 8th: Things Remembered 

What is an item you have kept with you that reminds you of an important time in your life?  Whether it was a good day, a stressful time, or a happy moment…why does this item remind you of that period of your life?

I have to admit, that I have an obsession over stationary.

Notebooks, journals and pens are examples of the type of stationary that I love to buy, and over the years, have acquired a lot of pretty and beautiful stationary.  The blank pages are embellished with my thoughts, memories, experiences and important reminders.

These notebooks are not only a reminder of the good, bad and important times of my life but they tell a story.  A story of a girl. A story of a girl struggling with unexplained symptoms, and doctors attempting and unable to find the answers.  It charts my story from being undiagnosed to finally having the diagnosis of a neurological disorder.  These pages not only charters the factual information from the time, but also contains my personal thoughts and feelings; the disappointments, frustrations, and the tears.  But also the relief and hope.

Writing can be a cathatric experience...
Writing can be a cathartic experience…

These journals are not only important for posterity, but for someone living with a chronic illness they are incredibly useful in order to chart life with said illness.  By keeping a journal, it makes it easy to look back into the past and track the changes, and any possible deterioration in the symptoms that I endure on a daily basis.  Often when doctors ask us, about our experiences with our symptoms in the past, it can be difficult to remember, or in the stress of the appointment, we cannot find the words to describe what my pain feels like, or how does the dizziness make me feel for examples.  However, by having written documentation of everything regarding my life and experiences I do not have to struggle to remember, or find the words as they are already written in front of me, in my own words about my own life.

Some of the lovely notebooks and journals that know all my innermost thoughts...
Some of the lovely notebooks and journals that know all my innermost thoughts…

The journals are not useful in recalling the past in regards to the symptoms associated with the neurological condition I have been diagnosed with, but they are also a wonderful opportunity to reflect on the accomplishments we have managed to achieve despite the limitations placed upon us as a result of living with a chronic illness.  On the bad days, in which the symptoms are particularly debilitating, it can be so easy to wallow in misery and ruminate on the limitations and everything that chronic illness has taken from us, but it is on these days that we need reminding of everything we have achieved DESPITE chronic illness.

My journals mention all the accomplishments that I have managed since receiving the diagnosis of a neurological condition – going to places that I have not been able to go for many years, and staying out despite experiencing severe symptoms, going on a cruise to name but a few.  And it is these accomplishments that I still have managed to achieve despite my condition and its symptoms getting worse.  They are reminders that a great life can still be found even when experiencing difficulties which are out of our control.  They are also a great motivation on those bad days, or when negative thoughts continue to plague our conscious thoughts.

These notebooks and journals are important items that I own, not only because they are mine, but also it represents everything about me – my story, my life and my own words.

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Disappointment is often something that you live with when living with any chronic illness – due to fluctuating symptoms and flare ups we often have to miss special occasions or cancel plans with friends or family.  And followed by cancelling of plans, comes the inevitable pangs of disappointment of missing out on such occasions.  This disappointment is even more amplified when friends talk about how wonderful the night was; making you feel even more miserable that you missed out (again!).

I felt this pang of disappointment recently – one of my goals for the beginning of the year was to visit the cinema as I really want to see the film version of Les Misèrables.  However, when I attempted the trip to our local multiplex cinema, I was so overcome with the dizziness and vertigo that I was just unable to stay in the building.  Of course, I felt extremely disappointed – in myself and my broken brain; stopping me from enjoying something as ‘normal’ as visiting the cinema.  I all honestly, the experience made me feel like a failure – failure as I failed to achieve a goal that I so desperately wanted to accomplish.  Hopefully, this is a setback and one day I will be able to go into that cinema, and even be able to stay long enough to watch the film.

So how should we ‘spoonies’ cope with these inevitable disappointments when we are unable to attend events or accomplish goals we wanted to achieve?

Well,we fist need to acknowledge the disappointment and anger that we may feel towards the illness that often feels as having robbed our lives. Then after acknowledging the anger we then have to deal with it.  This could be going to counselling or attending a support group associated with your particular condition.

Educate yourself, of your condition – there is no such thing as an overeducated patient.  Read as much literature as you can; and learn how the disease or illness can affect the body.  This can make it easier to perhaps plan for such times when we are invited out somewhere or planning trips somewhere, and perhaps being able to come up with a ‘plan of attack’ – a plan for dealing with such problems that can arise as a result of the particular health condition.

Perhaps, the biggest lesson that I have learnt is that we are all more than our condition.  We, of course, need to acknowledge the existence of said disease or illness, however it does not need to be self-defining.  Although there may be certain activities or have certain limitations, there are still however, plenty of things that we ARE still able to do.

It is often important when dealing with disappointment after not achieving goals, it still to keep a positive attitude as research has shown that being positive despite illness makes it much more easier to cope with.  Be grateful for everything that you do have rather than focusing on everything we haven’t or focusing on pain or our negative situations.  Perhaps keep a gratitude journal and list all the things that we have been grateful for on that day.

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How do you deal with disappointment?  And more importantly how do you cope with the disappointment?

Welcome to the very last post of the WEGO Health Activist Writer’s Month Challenge – a time to reflect on the last thirty days, writing everyday based on prompts provided.

I personally would like to thank WEGO Health for the opportunity to take part in the ’30 Days, 30 Posts’ Challenge.  The prompts provided allowed me the opportunity to think about my condition and the challenges associated with it in more detail and also made me think about my health, and the difficulties I face in more detail, and how I may be able to overcome them.  The HAWMC also challenged me as a writer, writing in different styles that I may not have used otherwise, and the ‘fun’ prompts such as the Haiku poem or the madlib was completely different to anything I have tried before.

My favourite prompt?  My favourite prompt was those using images to convey my health condition and health focus.  It was difficult at first, as my particular condition is ‘invisible’ but I found clever ways to portray the neurological condition I live with.  The Word Cloud was really fun, just choosing particular words or phrases that I associate with my condition, and the word cloud itself looked amazing.

The most difficult prompt?  One of them which I found most challenging, emotionally and bringing up painful memories from the past was the ‘Dear 16-year-old-me‘, although I found the Health Mascot also challenging, particularly as I am unable to draw, which my efforts probably showed!

Which ideas will you reuse? I am not sure whether I will reuse any of them, as I like to write fresh ideas or themes, so am not sure whether I would be able to reuse any of the prompts giving them a fresh perspective but will give the bonus prompts a go.

Who was your favourite fellow blogger?  I have several one that I have followed and read all of their prompts that they have written, finding them interesting, informative and inspirational.  One of them is Theresa, a close friend of mine, and as we have similar problems such as living with chronic dizziness I was really able to relate to her posts.  Another favourite is Katina, at Butterfly Lessons, a blog about ‘living a fabulous life with lupus’, a really interesting and uplifting read and love the positivity the blog exudes.  And my third favourite is Kim over at Hope Whispers, about living with a rare liver disease called Budd-Chiari Syndrome – another really positive and uplifting blog, and really highlights the importance of organ donation and is also really interesting reading about other illnesses or conditions different from your own.

Thanks again WEGO Health for the opportunity to take part in the ’30 Days, 30 Posts’ Challenge – I have enjoyed every minute, enjoyed even the prompts that challenged me.  And thank you for the opportunity to not only write about different aspects of my health condition but also the opportunity to write about other aspects of my life – after all we are not defined by our health conditions, illnesses or disabilities.  And thank you for challenging  and pushing me as a writer, maybe I have even become a better writer because of it.  Even though I have found some aspects and prompts very difficult, I DID IT!!!

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